Tales of Willowbrook

March 19, 2013

PAUL SMITHS - Susan Delehanty clearly remembers waiting on the tarmac at Adirondack Regional Airport as a charter plane packed with the first group of people with developmental disabilities landed after being whisked away from Willowbrook State School almost 30 years ago.

The state developmental center in Staten Island officially closed on Sept. 17, 1987, after it became a hotbed of controversy in the 1960s and '70s due to poor conditions, overcrowding and a lack of supervision.

Delehanty, the executive director of Citizen Advocates, spoke Monday at the opening of a traveling exhibit that will be housed at the Paul Smith's VIC for the next two weeks, entitled "Remembering Willowbrook."

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Visitors check out an exhibit that commemorates Willowbrook State School, a school for children with developmental disabilities that closed down in the 1980s after conditions there were exposed, at the exhibit’s opening Monday at the Paul Smith’s College VIC. (Enterprise photo — Jessica Collier)

The exhibit features a series of boards describing the story of the facility through photos, newspaper clippings and a timeline. It begins with Willowbrook's opening: The state started planning in 1938 to build the school for children with developmental disabilities, but it was used by the federal government during World War II, not opening for its intended purpose until 1947. The $12 million facility was originally built to accommodate up to 4,000 children between the ages of 1 and 16 with intellectual disabilities.

By the 1970s, there were more than 6,000 children housed there, and they were living in desperate conditions, with too many kids not being supervised, not getting enough food and even being subjected to medical testing for hepatitis. Robert Kennedy, at the time a U.S. senator representing New York, called it "a snake pit."

Several Staten Island newspapers documented the conditions, but not much was done until 1972, when Geraldo Rivera, then an investigative reporter, got into Willowbrook with the help of a doctor who had been fired. Rivera documented on camera what was happening to the residents of Willowbrook, and it lead to a series of reforms.

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The speakers Monday noted how significant the events at Willowbrook were to directing the future with Sunmount Developmental Center and the related nonprofit service providers here. The reforms began a push to move people with developmental disabilities from institutional to community settings.

When Rivera's expose aired, there were 20 institutions across the state serving more than 30,000 people total. Now, there are seven institutions serving 1,100 residents, with two slated for closure by the end of 2013. And 6,200 group homes have opened since the 1970s, serving an estimated 40,000 people.

Delehanty said the state has come a long way since the Willowbrook days.

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She said Sunmount, based in Tupper Lake, and its related voluntary agencies spent several months leading up to the arrival of residents from Willowbrook, constructing new facilities and training new staff.

"We were excited to be part of such an historic event, not only for New York state, but across the nation," Delehanty said. "The North Country has played a role in one of the major civil rights movements ... the de-institutionalization of people with developmental disabilities."

Tom Techman told the story of how he worked his way through the group home setting to a point where he can live on his own in Saranac Lake, with the help of service providers who visit and help him with things like keeping his apartment clean and organized.

He said the group homes he lived in downstate felt at times like mini-institutions, but with the services he has gotten in Saranac Lake, he has benefitted from personal, individual attention, which has given him a chance to grow his musical talents and other skills.

"It means so much to me," Techman said.

Sunmount's ombudsman, Jim Boucher, said Sunmount currently houses about 165 residents, and officials there are always trying to lower those numbers by moving more residents into community settings.

He said Willowbrook paved the way for the disability rights movement and self-advocacy within the OPWDD, and that Sunmount residents now lead full lives, participating in things like sports, arts and crafts, plays and outdoor activities like fishing and hiking. They also participate in volunteer activities like Meals on Wheels.

Tupper Lake Mayor Paul Maroun, also a member of the Sunmount Board of Visitors, said Sunmount and its related organizations want to make sure they keep moving forward with how they care for people with developmental disabilities.

"We want to make it safe, and we want to make it livable," Maroun said.

Officials at the event Monday estimated that maybe 50 survivors from Willowbrook are served locally by Citizen Advocates and about 200 are in the state's care in the Sunmount catchment area, which includes Franklin, Essex, Clinton, Hamilton, Jefferson and St. Lawrence counties.

They said they didn't believe there were any of those survivors at the event Monday, out of sensitivity to them. But one person signed the guestbook at the end of the exhibit as "living survivor from Willow Brook."

Other notes in the guestbook expressed how far things have come since the Willowbrook times, and one or two suggested that there are still steps that need to be taken to get away from that past.

In the middle of the exhibit is a small table with a vase of flowers and a box of tissues for those moved by the powerful images.

The exhibit was created by John Benedict of the state Office for People With Developmental Disabilities. It has been shown in about seven or eight places around the state, and when local service providers were asked if they would co-sponsor a showing in this area, "We said, 'Sure, we would be happy to do it,'" Delehanty said.

Once it is finished traveling, the exhibit is expected to be housed permanently at the remaining Willowbrook structures left, which are now part of the College of Staten Island, according to Cindy Fagen, an OPWDD regional communications manager.

The exhibit will be open at the VIC from 9 a.m. to 5 p.m. every day through March 29. On the final night, a music and art extravaganza will be held as a closing ceremony from 7 to 9 p.m.